Taking a Pause….

“The strongest people I have met have not been given a easier life. They’ve learned to create strength and happiness in the darkest of places”

Today was a day of pausing to appreciate the steps it takes sometimes; today was a day of accomplishments. I have always been a strong believer that it is after the hardest hurdles comes the greatest rewards. I believe that people give up too easy in this world. People cave to negative talk around them and that is when weakness sneaks in. To have faith and believe in those you love and in yourself is one one the most important characteristics one can have and today proved it.

September 2016, Aiden woke up from brain surgery unable to walk, talk or swallow. His voice trapped inside his body unable to break free. I was in complete devastation when Aiden woke from surgery with posterior fossa syndrome and cerebellar mutism. Everyday I would ask the neurosurgeon when he would talk again. To be honest, this paralyzed state was more devestating to me then the diagnosis of cancer. Many times I would yell out to god or whoever was listening “WHY COULD YOU NOT JUST GIVE HIM CANCER!”. I felt like he had already been stolen from me. I would look at the other cancer families and they could chat together or the child could tell the mother what was wrong, they could go for a walk when energy was up or have a meal together. I looked onto my child in the overside hospital bed for hours, days, as he just lay there, the doctors and nurses would come in and do procedures. For weeks I sat with Aiden in a hospital room without a single sound. I got so annoyed with my own voice trying to make-up for the silence I can only imagine what Aiden was thinking in his head. (I think that is why I can not help but talk in silence now more so then ever before.) I have asked him what it was like during this time and he explains “I was talking but I couldn’t get it out”. I spent endless hours researching mutism, I learned about ataxia, stroke victim, music therapy in the UK, I downloaded every app I could find, I yelled at staff that I felt like they have already put my child on palliative care! I knew nothing about therapies but I knew there had to be more! There had to be something to get him walking and talking again.

One of the first questions they asked when we went to Spaulding Rehabilitation Hospital in Boston was what our main goal was, instant response, “To talk again!”. For 6 weeks, everyday Aiden would get lifted out of his bed, transferred onto a stretcher and we would ride in ambulance to MGH. Aiden would be sedated for Proton Radiation and when he woke he would then be transported back to the Rehabilitation hospital for therapies. Half the time he was so tired but everyday he tried, even if it was to just get to the therapy room. When we could we tried to work the schedule so he could have speech and physio first thing in the morning before radiation. We tried a lot of things…. really, looking back this time was a blur. It was blindly stepping one foot infront of the other, not giving chance to stop or look back because if I did I may never get back up again.

At first sounds came like moans, nothing recognizable. I was told to try and follow his eyes to see what he may be needing but I found this hard. I was taught about non verbal communication, I know a lot of people do function like that but  I was not settling for that for my 7 year old; He was going to talk again! I remember getting so frustrated saying to the speech therapist one day, “Let’s move past this non verbal crap already!”. When we left Boston Aiden could stand assisted and was starting to use a walker but still no real words. We got home days before Christmas and I remember Aiden was on the stairs and said “Mom” for the first time in 3 months!  I remember paying to take him to a third party Speech therapist in Ottawa, she had a flip book of pictures “Monkey” “Book” “Car”, like teaching a one year old to talk.  Everyday we went to therapies, Physio, Speech and Occupational. I called all over to find places closer to home, had assessments set up,  or we would make up our own sessions, like taking Aiden to the little strip mall in town to practice walking. I had just sat in a state the art Rehab Hospital for 2 months I must have learned something!

Our home visit was short lived and end of February off to Toronto we went to start chemotherapy and more rehabilitation. The good thing about being in the hospital is that we would get the therapies everyday. When we were discharged to the RMHT it was far and few between maybe getting 1 session a week and sometime missing it because Aiden was just too sick from the Chemotherapy or just pissed off at the world and non-cooperative. March 13th, 2017 was the turning point. SickKids gave Aiden a sleep aid called Zopiden and everything changed from there. It was like this little drug, that the doctors had no clue why it worked in mutisim patients, had just fired up the cylinders, reconnected the wires that had been broken. He formed his first legible sentence! I will never forget this day for as long as I live to have a conversation with my boy after so long in silence. It was like getting a sip of water after being lost in the desert for so long. Aiden ended his Chemotherapy July 2017 and did another stay at Bloorview Rehabilitation hospital in Toronto finally returning home in September. He was able to walk with a walker or holding a hand, he also had a wheelchair for safety and for getting around and long distances. If you have seen Aiden walk it is kinda a baby deer, he has scared me many a times but I must say has never really fallen from lost balance. His speech was legible and we joked that if he lived in a southern state he would fit right in with the southern drawl. Aiden started back at school just after Thanksgiving holidays in October. This was a huge transition, Aiden would sleep hours on end, he would have outburst of frustration as he tried to do something that use to be so easy. The school set up meetings to get Aiden equipment he needed, therapies were set up in the school, nursing to come in at lunch to do G-Tube feeds. I would get a call to come pick Aiden up due to vomiting or fatigue more often then not in the week and thank god I have the most amazing friend NINA to help during these time.

Even though this transition back home was very difficult on many many levels at least we were home, we were rebuilding this new, very different, life. After everything, I could start to see through the storm clouds again. No words can give meaning to what I felt after hearing Aiden relapsed in December. After everything he had worked so hard to overcome the world just seemed so cruel and unjust. And I could have thrown up my hands to the air right then and there but on that drive home from Toronto in December I said to my Dad, “At least I have my Aiden this time!”. I guess someone did hear my cry! Aiden started back on Chemotherapy and we have rode the ups and downs these last couple months which makes me appreciate days like today even more.

Graduation
Celebrating Declan’s Kindergarden Graduation Together!

Today was a day to be grateful for what we do have, and not worry about what may come! Today I could not be more thankful for all the support we have had around us. To all the therapists who got yelled at and came back. To SickKids for thinking outside the box. Thankful to the school that set up endless meetings to help both the Boys. To Aiden for being such a strong willed Firrier conquer! I have a boy who for the most part is loving life at this moment. Who is getting on stage and singing songs, who is climbing monkey bars, and eating smores!

This voyage has taught me to stand up for what I believe, for myself, and for others.  I will never be able to look back and say it was not for lack of trying. I have faltered, I am not this strong person people see all the time, but this voyage has taught me that even though we may fall we must always get back up again. It has taught me that you do not always see things or appreciate things when they are happening but when you pause and step back you can see how things come together. Nothing in this life is instant  or easy and if it was it would not be worth it. There is always a choice in life, even when both option do not seem better then the other. Our choice has been one foot in front of the other and when it seems we can not go on anymore we are so incredibly lucky that there has always been someone there to help us get past the next step.

This video of Aiden getting on stage at the school talent show today helps me see that we can get through the storm clouds once more. I could not be more incredibly proud of my Boys today!

 

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